Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Monthly Archives: September 2014

I approach my invisible audience guiltily, knowing I have posted nothing but health-related stuff in simply ages. The guilt goes forward and backward in time, since I am not posting anything I’ve made today, either. Sorry, chickens.

Speaking of chickens, my house backs up to a small farmer’s field (that is never sown, only endlessly plowed on days when the wind will blow all the dirt into my yard) and another property at the upper southwest corner that keeps chickens. Watching the chickens 50 yards away from me (or more, I’m not a good distance measure-er) in the evening when they suddenly emerge to strut about the field has become a highly anticipated occupation for me, while at the same time I mourn that they are too far away for me to hear them doing their chicken business. Our HOA doesn’t allow chickens, and in the spirit of how marriage is about having to fucking share and be flexible I am alone in the desire for chickens in my household. The child doesn’t count because he wouldn’t help with them anyway.

Our first play of the season opens tonight and it is just a terrible play. It’s part of a genre of play that serves only as a vehicle for the playwright to navel-gaze, and tells a story that isn’t interesting or worth telling. The cherry on top is that it features what is possibly the worst sex scene in the world in that it is directed in an unnatural, awkward and unrealistic way and set around a problem that is introduced mid-play for no real discernible reason except that should I ever meet the playwright I will be unable to make eye contact and will wonder when she shakes hands if her vagina seizes up that tightly or more tightly or what. The same amount of hard work and endless hours and thought go into a bad play as a good play, so it is kind of like running a marathon only to cross the finish line to find out that they canceled it and everyone has already gone home. Also, hiking pants are not designed for figure flattery, they are designed for function. I cannot make your actor sexy in her hiking pants, and I reached a point where, had I received one more email about it, I was going to send pictures of female Olympic snow-boarders with no words in reply.

See also: the pants are not the problem with your play, the inability of the female lead to deliver lines with any expression is the problem with your play.

Health issue wise, this has been an especially miserable few weeks. Essentially doctor-less, I have found that damp weather has a grave effect on my joints. I have also found that pain distorts my ability to respond to things and there have been two large dust-ups with my spouse that resulted in bad behavior on my part (as I told the Shrink, yes, I did ask myself if I wanted to get on this ride, and while the right answer would be no, I got on that ride and RODE THE SHIT OUT OF IT). The extra pain means I am X% more crabby, X%more angry, X% less in control of my mouth and thoughts. The timing is poor given the rotten play and a interim department chair who has, in just a month, reduced the department to clumps of people hissing angrily in tight conversations while he floats unaware in the clouds of his ivory tower. Also: there is no good time for increased pain, amirite?

The massage therapist is helping a great deal, but nothing will function as a magic bullet or completely ease anything, and degeneration is a process that doesn’t stop. The day before yesterday, wearing one of the two pair of expensive, “sensible” shoes that I currently own, I nearly fell down while teaching class. I clipped the wheel of a rolling chair and naturally my ankle chose to just fall on its side. I saved myself with the counter but elicited a couple of gasps from my students and was disappointed when my wish for instant death was not granted and I had to clumsily recover and try to pass it off as minimal. Internally, I was deeply upset—I had made the promise that I would not go forth with any sort of ankle brace unless I fell down again and while I didn’t fall all the way down, I would have had the counter not been within my grasp. So I am lying to myself and calling it “not a fall.”

I do have projects going, so there is hope of more creativity-related posts sometime soon. I am also the costume designer for our second production this semester, which will be SO much better than the first production that perhaps the sex scene wherein the thrusting is mimed in such a way that the male actor’s dick would have to be at least 24″ long will be wiped from our collective memories. One can only hope.

The Shrink has decided that a big theme in my life is learning to let go and relax and not be hyper-vigilant and tightly wound all the time. And I’m not saying I don’t agree with that, actually, because I can see that being tightly wound as I am is not really all that good for me. I had related to her that at my second massage, the therapist asked me if I’d done natural childbirth with my kids. I said yeah, well, mostly with the last one. She said that it might help for me to tap into the breathing one does during labor to help distance themselves from the pain. The issue being that my body really fights back during things like massages. So, anyway, I told The Shrink that I did that and it seemed to really work, and she seized on that saying, “See, Guenevere, I think this is a theme for you in the universe right now, that’s a very good example!” Gold Star for the teacher’s pet, right there.

My massage appointment is on Fridays, but today we also had a mandatory meeting scheduled at work that would happen immediately afterward, and to which I would likely be late, something I had let the committee chair know in advance. Further compounding matters was the fact that yesterday I received a small postcard in the mail from my PCP’s office that said that the “..results of your X-ray were NORMAL.” That’s it, the end. I called and asked the (70 year old, beehived) receptionist if this was accurate since I had an MRI, not an X-ray. “Yes, Gwen, that’s right!” she said, cheerfully referring to me by a name that is not my name. I asked if might pick up a copy of the report, then, for my records? And we arranged that I would do that today.

The MRI(s) of my hips cost me $283 out of pocket. For that money, I could have relieved my pain by buying this dress or this plus a nice dinner. Or a month’s worth of once a week massages. Instead, I apparently spent it on a postcard. Frustrated, I collected the report this morning on my way to get a massage (and naturally the report was not ready because: beehived reception). Indeed, it listed a number of things as being normal. Normal. I called the husband and wept out of frustration; with a clear MRI who, now, will believe me that my fucking hip hurts all the fucking time? I declared that I would be skipping the Mandatory Meeting today, because I was just fed up and didn’t feel like it. One last perusal of the report gleaned a sentence that said “degenerative disease in the symphysis pubis.” Huh.

After the massage I returned home, all oily and relaxed-ish, driving past work and not turning to go to the meeting, flying gaily past in order to go home. There, I looked up this degenerative disease and symphysis pubis thing and found that this happens due to instability in the joint. It can cause pain deep in the socket on the groin side. It causes too much stress on the SI joints. So, maybe there is a finding, but unfortunately my PCP is in the wind and his father, who is minding the store, is a shitty doctor to begin with who might not read an entire paragraph on a xerox copy and who certainly wouldn’t read my chart or note my diagnosis and see a connection. Nope, send her the postcard, Beehive, and let’s move on.

I texted my coworker that I would not be at the meeting, then felt guilty for not going to the meeting. A few minutes later, the phone rang, and it was my Physical Therapist, whom I had basically left at the altar a month ago. I told her that it was coincidental that I had just picked up my MRI report this morning. I related the above issues (seems like a finding, but no physician to help me figure it out, so once again being my own doctor) and she said that she had recently taken a class about women and hip/back pain, and that she agreed this symphysis aspect would contribute to the issues and that she does not think I’m crazy and that the functional instability might not show on MRI because it can’t show that the muscles are working but working incorrectly. She suggested, “10,000 of the stupid tummy squeezes everyday. Seriously, your muscles are all you’ve got.” She also understood and supported my decision to shift my monetary resources to massage rather than her. She said she would be happy to answer questions if needed her expertise and if I wanted further exercises to just come by and she’d show me a few.

So, there was a reason I skipped that meeting, and one reason was that I didn’t want to go and I’ve never missed a meeting in 4 years, and the other reason was that I really needed to take that phone call and have time to talk to her.